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How to communicate with people with dementia (or anyone!!)

Written by Karen Banning

I have to confess. I am a list-maker. My excuse is that I am a visual and kinetic learner. Seeing the words in front of me and the actual movement of writing help me to remember what I have to do, or buy or who to call. 

It may not be polite to carry a list of the following communication tips, but you can review them and try a few at a time. They are even useful in everyday life, especially when meeting new people.

Be pleasant and even happy

While care for your loved one can become tedious and emotionally draining, if you can find one aspect that is pleasant, you can exaggerate it. One of our clients says "Bottoms up!" when dressing his mother with Alzheimer's. It has become their private game, repeatedly enjoyed by each of them.

Smile

Keep a genuine smile on your face. Yes, people can detect a fake smile. One of the last things people with dementia lose is their ability to read faces and recognize feelings.

Use your body language

Bend or sit down to reach their level. Lower your head. Standing or hovering is intimidating and scary. No one can focus when they are afraid. Be conscious of your body language; keep it open, calm and even joyful.

Keep calm

Try to speak in a calm manner with a pleasant voice, even if you don’t feel that way. If you sound angry or agitated, people will often mirror that feeling back to you and then some. In any disagreement, catch yourself and stop arguing. You will be surprised at how effective this can be.

Speak more slowly

I am often trying to get all of my thoughts (and opinions!) out at once, while speaking. I am often "nicely urged" to slow down. I then breathe between sentences and give others a chance to hear and then respond to my words. This will make a great deal of difference when speaking to someone with dementia.

Stay on one topic

Have you noticed that when communicating with the men in your life; the simpler, the better? Studies have shown that women multi-task much better than men! Keep your conversations about one topic and use short sentences.

Do not ask "Why"

Why is a very hard concept to grasp. It involves much greater thought than simple statements inviting conversation such as, "That dinner was delicious. What did you like about it?"

Don’t say “Remember”

They can't remember. If people bring up memories, you can expand on those. But asking a person with dementia to remember is embarrassing for them and may make them angry. It is embarrassing for everyone.

I am learning to use these tips in my daily conversations. I hope they are helping others to understand what I am truly saying.  

 


How to Greet People with Dementia

Written by Karen Banning

25 years ago, walking to an Ocean City, NJ beach with my three-year-old daughter, I sang at each street corner. "Stop, look and listen, before you cross the street. Use your eyes, use your ears, and then you use your feet!"

Approaching a person with dementia is significantly different than greeting a friend or family member. It is important for you to know that their brain is changing. They are confused or anxious. They may not remember you, that you were coming, or why you are there. To ensure that your appearance does not startle a person with dementia or put them "on edge", try the following, which is very similar to that little song: 

 

Direction

Always approach directly from the front. Many seniors have poor vision and have lost their peripheral vision. Coming close to them or speaking to them from their side or from behind will disorient them.

 

Stop

The comfort zone for most Americans is six feet. This distance can vary by culture! In the US, a distance less than this 6 feet creates a stranger/danger response. Stopping will alert them to your presence.

Wave

Waving might be considered a universal motion of acknowledgement. A hand motion will direct their attention to you and is a second indication that you are approaching.

Look

Establish eye contact from this distance and smile, invitingly. It is vital that they actually see you and that their attention is focused on you.

Speak

Call their name. Our names are the first words we learn. Even though our elders begin to lose short term memory and regress, we all know our names. Calling their names immediately establishes that we know them and they must know us. This connection is what we are looking for.

Touch

Approach slowly and extend your right hand to shake hands. Shaking hands is something Americans do throughout our lives to demonstrate friendship.

Once you have each other's hands, true communication, on a positive note, can begin.


Alzheimer's Fundraiser at First Parish Concord - Swingin' & Swaying': An Evening of Music and Dance

Written by James Reynolds

A fun-filled evening to benefit the Alzheimer's Association!

This coming Friday, the Liberty Alzheimer's Partnership will host a fun evening of music to raise money and awareness for the Alzheimer's Association. Music of the 40s, 50s, and 60s will provided by the Golden Tones, a chorus of senior citizens based at the Wayland Council on Aging, and by the Vocal Revolution (formerly Sounds of Concord), an award-winning barbershop chorus. Singing along and dancing are not allowed - they are required!

It is an early evening (5:30pm-8pm), to allow families to bring members of all ages, from youngsters to those who may be suffering from dementia. Light supper will be provided. Location is First Parish in Concord, 20 Lexington Road.

It will be fun and inspiring, and for a good cause. We hope you will join us!

Liberty Alzheimer's Partnership Fundraiser Details

DATE Friday November 8, 2013 5:30PM - 8PM
ADDRESS First Parish in Concord
20 Lexington Road
Concord, MA 01742
PRICE $10.00
TICKETS Call Sally at Concord Council on Aging
978-318-3012
Limited tickets will be available at the door.

The Liberty Alzheimer's Partnership press release follows below:

The Liberty Alzheimer's Partnership of Greater Concord will host an evening of "swingin' and swayin'" with music and dance from the nostalgic 40s, 50s and 60s. Join us to sing and dance the night away on Friday, November 8 from 5:30 to 8 pm at First Parish, 20 Lexington Road, Concord, MA. All members of the community are invited to this event, which is designed to be enjoyed by all ages. Individuals with Alzheimer's and related dementias, their caregivers, family members, friends and anyone who likes music and dancing is welcome!

The fun-filled evening will include music for singing and dancing by The Golden Tones, a chorus of seniors who love to sing songs from the past, and The Sounds of Concord, a barbershop quartet singing those golden oldies. Also enjoy a sing-along to our favorite songs by Jerry Hurley, trivia games and blast-from-the-past videos. A light supper is included.

Tickets are $10 per person and can be reserved in advance by calling Sally Lopez at 978-318-3012. A limited number of tickets will be available at the door, so advance registration is recommended.

The Liberty Alzheimer's Partnership is a group of volunteers dedicated to raising awareness and providing education about Alzheimer's disease and related dementia. The group also raises funds to help support the work of the Massachusetts/New Hampshire Chapter of the Alzheimer's Association.


 


Caregiver Stress – 5 Ways to Care for Elders and Maintain Your Sanity

Written by James Reynolds

margot-gardeningEditor's note: a version of this post was published in our column in the Concord Journal.

“She’s running me ragged!” A client said that to me recently, speaking not of her small child but rather of her aging mother. A dutiful daughter, she finds herself sometimes overwhelmed with the tasks of caring for an aging parent. It is a common conundrum: how do we care for aging parents while maintaining sanity in our own full lives?

How long will it last?

One important criterion when you care for an elder is how long the current condition will last. If someone had a hip replacement, your role is time-bounded and the strategy is to be sure you have enough resources to weather a short-term crunch.

But sometimes the caregiving lasts for years, as with chronic conditions like COPD or with Parkinson’s Disease. In these cases, learning to manage your own stress is as important as being sure that Mom gets to the next medical appointment. A good maxim is to remember the admonition before each airline flight: put on your own oxygen mask first – you are no good to anyone if you pass out. Remember you are in a marathon, not a sprint.

Signs of Caregiver Stress

Signs of stress are surprisingly easily to ignore. If you are anxious or irritable continually, it is tempting to think, “That’s just the way it has to be now,” but this is often a sign of care-related stress. To be sure, grief will be part of the process, but grief is different from stress.

Sleeplessness, or sleeping too much, combine with anxiety and irritability as indicators and aggravators of stress. The spiral can lead to full-blown depression in severe cases. In particular, if you find that you avoid your time devoted to favorite activities, be on the lookout for ways to return to them. Do not let a caregiving role eliminate that which sustains you. You need it, and your loved one needs you to be replenished.

Know What You Can Do

Since you will not be able to everything, select your role deliberately. Depending upon your other commitments, your relationship with the elder, and your own personality, some tasks will fit more easily for you. If your loved one needs personal care (help bathing and toileting, for example), you may decide that is a role best filled by others while you focus on grocery shopping, getting bills paid, and doctor’s visits. Or if you find the personal care rewarding, do that and let others handle remaining tasks.

Above all, be on the lookout for guilt. You may be the favorite caregiver for an elder, but you cannot do it all. You are entitled to set boundaries that work for you over the long term. You elder is likely grieving himself, and may be afraid or confused. “Getting old,” as Bette Davis said, “is not for sissies.” But although you can do chores for loved ones, you cannot bear their burdens. Know what you can do, then set your limits and offer your services with love.

Request – and Accept! – Help

Do not shrink from asking for help. This may be from other family members and friends, your faith community or local senior center, or professional caregivers. Perhaps an adult day center is appropriate while you go about your day’s business, or a neighbor can check daily to be sure that meds have been taken on time. Being part of a team of people working together to support an elder has its own rewards; it reduces your isolation, and it relieves your stress.

Include Remote Family Members

If you have siblings or others who live at a distance, work to include them in any task that does not require physical presence. Delegate! Money management and household vendor management, even talking to doctors and coordinating heath care providers, can all be handled remotely. Do not hesitate to ask for help; remote family members often want to know what they can do (and they have obligations even if they don’t).

Use Local Resources

Take classes and seminars related to the condition of the person you care for. A local hospital probably has some, or the Red Cross, the Alzheimer’s Association, or similar group. You will find helpful hints and meet others dealing with the same issues you face.

Get Out of the House with a Friend

Remain connected socially to your friends – outside the care setting. Even if it is just a walk, get out together. A meal is better, and better still is a shared hobby or activity. Schedule it each week, and arrange for care from someone else that day if necessary.

Above all, remember that help is available, and you are not alone. Elder care can be taxing, stressful, and sad. But it can be rewarding, even so. Taking care of yourself and asking for help will make it easier.

 

 


Long Term Care Insurance 101 – What You Need to Know

Written by James Reynolds

dollars

Editor's Note: A version of this blog post recently ran in our monthly column in the Concord Journal.

Care for aging relatives can be expensive, however your family chooses to cover it. Whether it is an assisted living facility, home care, or living with family, many financial and personal trade-offs are required – often over a period of many years. As we discuss this with families, the value of long-term care insurance (LTC) becomes clear.

Long term policies can be purchased at any point, but as you would expect, cost and rates of declined service increase dramatically with age. If you are still in your fifties, you should seriously consider purchasing it. This is not, however, a commercial for new purchasers; we will focus this post on what you need to know if a loved one already has the policy, how to understand what it covers, and how to calculate its benefits.

What's Covered?

The first important point is the difference between services covered by health insurance and Medicare on the one hand, and LTC policies on the other. Imagine that an elder returns home following knee surgery. Medicare will cover the basic post-operative clinical needs – wound care, administration of meds, etc. Private medical insurance may well cover additional medical services associated with your recovery – supplemental physical therapy, for example. But if your loved one cannot get out of bed to go to the bathroom or make a meal, neither policy will cover those needs. That is where an LTC policy comes in. It typically covers non-medical care associated with inability to manage independently with Activities of Daily Living (ADLs).

Assignment of Benefits

When you receive care, you can pay the invoice and then submit the claim yourself for reimbursement. This, however, puts the paperwork burden on the family. Most families prefer to have the provider handle the claims, which requires Assignment of Benefits. In order for the Long Term Care insurance to pay a care provider, you must sign an Assignment of Benefits and have that Assignment approved by your Long Term Care insurance company. At that point, billing headaches belong to the provider. Typically, the provider will need to submit its license, intake assessment, and care plan to the company, along with all invoices with care dates and visit notes, in order to be reimbursed.

Elimination Period

In many cases, the family must pay out of pocket for a time, called the elimination period, before the benefits kick in. Policies typically have elimination periods between 0 and 180 days. If you have a lower elimination period, you can start to collect sooner, but you will have to pay more for the policy, so you need to consider the likelihood that you will need care and be able to afford the cost for a period of time. Most often, you have to have the same level of care during the elimination period that you have after the policy begins to pay, unless there is a documented change in your status. For instance, you rarely can pay out of pocket for 4 hours per day during the elimination period and expect the insurance to pay for 24 hours once the elimination period has been satisfied.

Daily Benefit Amount

This represents the maximum amount the policy will pay per day. Usually it starts around $50 daily and can go to $300 or so. If you need care beyond the daily cap, you will be out of pocket for that amount. However, a higher daily benefit means a more expensive premium. A lower daily cap still offsets the cost of several hours of care and can ease the impact of the bills, if they come.

Inflation Rider

Some policies have an inflation rider so the benefit rises each year. A 5% increase in benefit amount on a $100 per day policy would essentially double to $200 per day after 14 years of owning the policy. The younger you are when you purchase the policy, the more important the inflation factor is.

Benefit Period

This tells you how long the policy will pay. Until recently, some were unlimited, and your loved one’s policy may include that provision. As people began living much longer, however, companies stopped that provision and many even exited LTC altogether. Benefit periods may be as little as a year, so check this carefully.

Facility Care vs Home Care Benefit

Some Long Term Care policies have two tiers of care, and the Maximum Daily Benefit applies only to a skilled facility such as a Nursing Home. The Home Care benefit may be smaller. If this provision is in your policy, be sure you base your calculations on the appropriate tier before engaging care.

Depending upon your bent, considering all these factors may be difficult. If so, consider getting advice from someone you trust because the difference in outcomes can be significant.


Does Mom Need Care? Here's How to Tell

Written by James Reynolds

Editor's Note: A version of this blog post recently ran in our monthly column in the Concord Journal.

Summertime vacations always bring an increase in calls from concerned adult children with some flavor of this question: “During vacation, we noticed Dad is slowing down. We think he might need help at home, but we aren’t sure. How can we tell?” The decision is not always clear -- keep reading for tips we have developed working with many families.

The easiest decisions follow events that show clear and present danger: traffic accidents or dangerous driving, falls, or home safety hazards caused by inability to mange the home (stove left on, unaddressed plumbing problems, roof leaks, etc.). If this is happening, then it is time to step in, even if “nothing bad happened yet.”

Rationalizing – “It could have happened to anybody; could have happened when I was 40.” – is often deployed by someone resisting care, but the point is that you don’t want to wait until something bad happens; the near-miss is a gift and an opportunity. It shows, with little to no cost, a need for change. Take the gift, and do what is needed. Even if there is resistance, be persistent.

(The caveat: all competent adults have a right to self-determination; this is not an excuse to force a parent to live the way you’d prefer. Yes, fender-benders happen to younger drivers, too. If you are unsure of where you are in the spectrum, keep reading.)

Even clearer signs include early or moderate dementia, incontinence or poor hygiene, and poor medication management. These are not debatable: if this is present, your loved one is unsafe living alone and needs help.

The more difficult decisions arise when warning signs are present but not determinative and you are the closest family member responsible for safety. The best approach, if at all possible, is to open an honest discussion with the person. You can keep it hypothetical if that helps – “Uncle Albert, while you’re still healthy, I wanted to talk about what to do in case something happens. What do you think we should do if your driving skills fall off, or if it gets too hard to manage the house?” Often times, people do not know how to ask for care and a discussion of hypotheticals may allow preferences to emerge that would otherwise have remained unstated.

As you consider whether the time has come to step in, focus first on physical skills: how well does the person drive? Can your loved on walk and get up a flight of stairs easily? Is it still a reasonably simple task to get proper daily nutrition, take meds, manage the home, and maintain personal hygiene? The next consideration is how the elder would handle an urgent or emergency situation: what would happen if Dad were alone and cut himself with a kitchen knife, or there were a gas leak, or he fell? Do not focus on what is optimal or what you prefer; he is entitled to handle these his own way, provided he can keep himself safe. If you are concerned about these matters, however, this is a sign that it might be time to start the discussion about extra help.

And on that topic, be sensitive to your attitude and how you raise the issue. Remember that most adults would love to have a personal assistant, but nobody wants a baby-sitter. If your unstated attitude is, “You are clearly too old to be living alone, and you cannot manage your own affairs,” you are much less likely to have a productive conversation than if you convey, “We love you and want your golden years to be as easy as possible. Let’s get you an assistant so someone else can handle the chores.” And if the assistant can be a family member or friend, that’s often more palatable, especially at first.

If you are still uncertain whether it is time for more help, or if your initial discussions meet resistance, it may be best to get a neutral third party to help advise your loved one. If the relationship with the primary care physician is good, ask for an appointment that you can both attend to discuss your concerns. A professional geriatric care manager (check with the National Association of Professional Geriatric Care Managers) who specializes in creating care strategies can also be a great aid. I find that those whose backgrounds are in social work or counseling are best in these situations. Many GCMs are nurses, but you want someone whose training makes her a good mediator and facilitator of family discussions in addition to conducting the actual assessment of the elder.

Finally, do all you can to involve other family members in the discussion. The more collaborative the decision-making is, the greater the chance for success and for cooperation from everyone.


Announcing Start of Home Care Service in Maine!

Written by James Reynolds

map-service-area

We are proud to announce that we are opening service in Maine, and plan to begin serving New Hampshire by the end of the month.  Karen Banning of Biddeford, who previously has served as Client Care Coordinator in Massachusetts for two years, has been appointed Director. The Seacoast office is located in Saco.

Our unique communications system, with online daily reports, photos, and status checks, continues serve as the hub of a system that provides better communications, better service, and better quality of life. That is our vision and the basis of our success.

Caring Companion's Alzheimer's and dementia services are based on an approach called Habilitation Therapy, developed by the Alzheimer's Association of Massachusetts and New Hampshire. Habilitation Therapy encourages safe, positive reinforcement of the patient's current state in preference to trying to reorient the patient to current facts on the ground, which often leads to unnecessary stress between caregiver and patient.

The Seacoast office will offer in-home care on both an hourly and live-in schedule. Many services are available and may include personal care, transportation, meal preparation and homemaking. We look forward to extending our service area and the families we can help in the process. Thanks to all our clients and friends for your ongoing support.


A Father's Day to Remember

Written by James Reynolds

Editor's Note: This post appeared in our regular column in the Concord Journal, Living and Loving: Elder Care in the 21st Century

fathers-dayFather’s Day changes dramatically once Dad is no longer independent, sometimes introducing questions of identity and authority as power is realigned. In early retirement, our fathers usually managed their own affairs and retained a psychologically important position of power in our lives – even if the life-long relationship has been more troubled than we might have hoped. But once Dad begins to depend upon us, the experience of honoring our fathers usually changes. Let us, then, take a moment to consider ways to celebrate this Father’s Day successfully, and perhaps to take a few lessons forward to the future.

If the relationship is good
The effort here is to find the right balance for your father’s current energy, health, and cognitive function. To make the day special, take the time to do more than the minimum (drop by for dinner and bring some cards), but do not over-tax him. Easy ways to make the day special might include

  • Make this a ceremony. Choose a different location or time of day from the average visit. Give him time “on stage,” as the center of respectful and loving attention. Many elders are on stage now only at the doctor’s office, talking about what’s wrong with them. Get some old pictures and ask him to tell stories about them, his life, and your family, so you can carry these forward and know your story. Include the grandkids; make the point to your kids that he is important, and they can give him the respect he deserves, for part of one afternoon.
  • If the kids can manage it, have them think of something to say also about Granddad. Maybe a story they remember about him, or an update about them tailored for him. Spontaneous exchanges often don’t occur, but if you give it attention, everyone can benefit.

Even if your father has early or mild dementia, ceremonies like this can be meaningful. People with dementia often do not retain short-term memories, but their emotional states are quite real. Your dad will know he is loved and being accorded respect; just this can make his day.

If the relationship can be troublesome
This is a common occurrence. Remember to make today about him. Try to give him the day he wants – not the day you want him to have. Just for today, leave aside any issues that don’t affect his health and safety today. If he drives when he shouldn’t, then plan a special driver for the special event, but don’t remind him that you got the driver because he’s unsafe behind the wheel. Just say, “Dad, it’s a special day and we want to treat you like royalty.”   If he can’t be relied upon to take meds, or has problems with incontinence, alter today’s schedule enough to have someone there (maybe not you) to be sure it’s addressed today, but don’t let him know. Having days when there is no tug-of-war will help.

If a spouse or an old friend is an effective buffer, take the time early in the week to arrange for that person to attend as well. If possible, speak to him or her and ask for support so that Dad has the best day he can, and you can survive with equanimity.

Perhaps it would help to sit before the event and write a letter and read it aloud when you visit. This gives you a chance to choose your words carefully and avoid references to hot button issues that can bedevil occasions like this. Keep the letter focused on what you can honestly be grateful for or can admire about him. Even if he failed to be as good a father as you would have wished, or you sense his disapproval for choices you have made, these matters can be left for another day (or not). For today, and for this letter, choose to focus your attention on respect and gratitude – and on love, if it is possible.

That said, if your father has a history of emotional abuse, it is not your job to sit through that until the day he dies. In those cases, find a way to pay your respects as appropriately as possible, but know your limits. If unhealthy behaviors start, give yourself permission to excuse yourself politely and respectfully, and leave. Only you know those limits.

This is a season of graduations and summer jobs, of vacation plans and other hurly-burly attendant to the lives of our sandwich generation. It is easy to swing by and skip taking much time to give our fathers time to express our gratitude for their parts in our lives, whatever that part may have been. But conscious gratitude is a habit worth cultivating, and with a bit of thought, you can make this a Father’s Day to remember.


Nationally-Acclaimed Alzheimer's Coach Teepa Snow Appears Wed May 29

Written by James Reynolds

Teepa Snow is a dynamic, inspiring, insightful coach for professionals and families who support Alzheimer's patients. She will appear in Newton on Wed May 29, 2013, to give a FREE seminar, entitled Essentials for Your Journey Together. This is a rare chance to see such a gifted speaker on Alzheimer's Disease.

At Caring Companion Home Care, we use videos of some of Teepa's training when we train our own caregivers to work with Alzheimer's patients. She is funny and empathetic, and her West Virginia accent stays in Massachusetts ears long after the video ends. If Alzheimer's is an issue in your life, take the chance to see Teepa.

Essentials for Your Journey Together
with Teepa Snow
Wednesday May 29, 2013
5:30PM - 8:30PM
Lasell Village at Lasell Collegede Witt Hall in the Winslow Academic Center
80 Maple Street
Auburndale, MA 02466

Teepa is a Fellow of the American Occupational Therapy Association, has received local, statewide, and national recognition for her expertise in geriatrics, dementia care and programming, and staff training. She has developed two training videos, published many articles, and presents locally, regionally, and nationally on a variety of topics and to a wide variety of audiences.


Dr Robert Stern Speaks on Alzheimer's Disease at Concord Council on Aging

Written by James Reynolds

dr-robert-stern
By Vernon Doucette,
Boston University Photography

Concord residents had a terrific opportunity to learn from one of the nation's leading Alzheimer's researchers last night as Dr Robert Stern, co-director of the Center for the Study of Traumatic Encephalopathy at Boston University's School of Medicine, spoke at the Concord Council on Aging. Stern, an excellent speaker, filled evening with both useful information and hopeful stories. 

I knew we were in for a good evening when he started off with what most would consider a professional and political No-No: he told a joke about a man suffering from Alzheimer's Disease. And his point was well-taken: successful Alzheimer's caregivers have to have a sense of humor.

Humor, Hope, and Help were his buzzwords for the evening, and he managed to address a frightening and complex topic in a way that was sympathetic and approachable. His primary message: Alzheimer's and dementia are not "just what it's like to be old." Some slowing is normal, just as we slow down physically. But confusion, memory loss, and inability to reason are not "normal aging" - they are signs of a disease, and with research, it is a disease that might one day be prevented or cured.

Data flowed freely: deaths attributed to Alzheimer's Disease rose 66% in the first decade of this century. More telling - it was the only one of the top ten causes of death that increased.  Death rates for other top killers -- cancer, heart disease, even HIV-AIDS -- declined.  This highlights the need for additional research and clinical trials. But the story is not all depressing, and he told several stories of families managing well with the disease. As we always say, you have to accept each day for what it is, but there remain many rich days in life even after the onset of Alzheimer's.  The emotional life of most patients remains very rich, and their ability to connect with loved ones can remain strong even after cognitive deficits have become clear to those around them.

As a researcher, he made a plea for more funding and more volunteers for trials.  "There's a wide range of trials at various stages," he said.  "Anyone over 50, healthy or not, highly-funcitoning or not, can contribute." Some programs are as simple as logging into a web site to track various activites; others are full-blown clinical trials.  All types of volunteers are needed, and you can easily find a trial to participate in at the Alzheimer's Association web page:  Alzheimer's Association TrialMatch® . I have personally signed up for several trials via this web site and it is easy to use.

The evening was very well-attended - I would guess more than 60 people were in the room at the Harvey Wheeler Center. It was fascintating, fun, and hopeful. People who are interested in Alzheimer's Disease should be on the lookout for Dr Stern if he speaks again in this area. He is a valuable resource and we were lucky to have him in Concord.


Reassuring Elders in Emergencies

Written by James Reynolds

dr-levineEditor's Note: A similar version of this blog post originally appeared in the Concord Journal here: Reassuring elders who live alone during an emergency - Concord, MA

This past week the Boston Marathon bombings put parts of the city and suburbs on lockdown, providing an unwelcome example of a type of emergency families rarely plan for: terrorism and police actions. Most people who care for elders think often about the elder’s own health crises, and all of us have to plan for blizzards, power outages, and related events. But reassuing a frightened elder during an act of terrorism? Not so much.

At least a blizzard or storm comes with some warning; this tested families and caregivers with its sudden and unpredictable course. As we addressed the logistics of the emergency, and got caregivers to everyone, we found ourselves responding also to clients, families, and care staff searching for words to comfort and reassure vulnerable people who may not have fully understood what was happening, but knew enough to realize that an ominous and uncontrollable threat was at hand.

Reassuring people in an uncertain world can be a difficult task. Part of the job is very practical: reduce the risk as much as possible, and be ready to respond if something goes wrong. But once that is done, we have the often-delicate task of reassuring a frail elder whose cognitive skills or memory may be compromised. Although our information is never perfect, emergencies like blizzards are common enough, and their paths well known enough, that we can provide some solid guidance. But the truly unpredictable nature of a terrorist bombing and a manhunt close to home can present challenges we rarely have to face.

At these times, personal trust is your best asset. Reassurance comes in many forms, and telling your loved ones that the door is locked may not comfort them nearly as much as sitting with them to help them feel secure (but lock the door anyway). Here are a few helpful guidelines designed to avoid the onset of stress, or to reduce the stress once it appears:

  • Comfort their fears. Last week, you might have reminded an elder that these are very rare events, and that many, many really good people were there to help, even risking their lives to help the wounded. Ask them about times they remember people who were extraordinarily kind or generous or heroic in times of crisis. Observe that people like that are still with us today.
  • Listen, and allow them to talk about their feelings and memories of the other events this may bring up. This may include stresses from long ago – WWII for example, or a time their home was robbed as a child. Allow those feelings to be voiced and those memories to be recalled, but …
  • ...despite the advice above, try to redirect attention so that no one dwells on the current threat. If at all possible, do not allow someone to sit and listen to the news about this all day, especially when there is really nothing new being said. lnstead, find an activity at home away from the TV or radio, or take them out of the house. Some people can be easily distracted with a favorite activity, and now is a good time to use it.

 

As we say with all parts of the journey in elder care, these times, if accepted for what they are, can still yield treasured moments. There is little more that we can do for those we love of any age than to be there when needed. And in that sense, if you can provide the support that settles their mind, you might create one of those treasured memories. It may be that providing comfort in a fearful time is an event you will remember years after your loved one is gone.


Al Armenti, Local Hero: Doing Well, Doing Good

Written by James Reynolds

al-armenti

I posted recently about a Johns Hopkins study on aging senior citizens: For Older Adults, Participating in Social Service Activities Can Improve Brain Functions. Today's story is about a man who could be Exhibit A for this point: local hero Al Armenti.

Al is well-known in his home town of Concord MA.  Well into his 90s, he is very active in many social service activities, in his church (First Parish in Concord, a Unitarian Universalist congregation), and in music circles.  He is a combat veteran and has been a peace activist for decades.  Recently, I received an email from Al reporting on his participation in the St Patrick's Day with the Veterans For Peace.  He writes by way of explanation that "As a long-standing member and, because of my age, I was allowed to ride in the back seat of an open convertible."  That's okay, Al, I hope that if I am still fighting the good fight when I'm nearly 100, someone gives me a ride in the parade, too.

Although it seems that Al has been a dedicated member of Veterans For Peace for since the Revolutionary War, his participation is somewhat more recent.  This is not a small commitment: a few days before the parade, Adrian Walker wrote a column in the Boston Globe about VFP's efforts to march in the traditional St Patrick's Day parade:  Antiwar Veterans Group Battles to March in St Patrick's Day Parade.  Al also sent along a video of the event (he appears in the red convertible toward the end).

The picture above at the right is Al playing his mandolin, which he still does in public.  One of his favorite songs is Pete Seegar's humorous My Get Up and Go Has Got Up and Went.  Delivered with a twinkle in his eye and an engaging smile, the song as Al sings it is clearly ironic.  His 'Get Up and Go' is doing just fine.

So here's to you, Mr. Armenti! You aren't old - you have just been young for a very long time!

Note: to avoid any confusion, I should probably specify it Al is not a client of CCHC. Just an inspiration.


Deborah Bier Selected to Deliver National Webinar Sponsored by Home Care Association of America

Written by James Reynolds

HomeCareAoA-logo

deborah-bierCongratulations to our own Dr. Deborah Bier, PhD!  The Home Care Association of America, the home care industry's largest trade organization, has asked her to deliver another of her popular series of webinars training professionals and families who are dealing with Alzheimer's Disease and Related Dementia (ADRD). In 2012, Debbie's first webinar was so popular that they immediately asked her to deliver three additional sessions on similar topics. We learned later that her sessions were being downloaded by agencies around the country to use in their training. Quite a compliment to her work, and a demonstration of the high quality we try to deliver at Caring Companion.

Debbie's trainings and webinars are based on a program developed by the Alzheimer's Association of Massachusetts and delivered through the state's Executive Office of Elder Affairs.  We use the approach, called "Habilitation Therapy," in training our caregivers for dementia clients.

Details of the webinar are below. 

5 Secrets of Successful Dementia Caregivers

Thursday April 11, 2013
2:00PM - 3:00PM

Alzheimer's Disease and Related Dementias (ADRD) require a many resources to manage on a daily basis, draining caregiver energy, time, finances and patience. But there are proven methods to make care easier, safer, and more enjoyable for both patient and caregiver. Learn some of these little-known best practices, used successfully by both professional and family caregivers alike.

Deborah Bier, PhD, is the director of care for Caring Companion Homecare in Concord MA and has been a holistic psychotherapist for 25 years. Certified by the Commonwealth of Massachusetts's Office of Elder Affairs and the Massachusetts Alzheimer's Association, she trains dementia caregivers and coaches dementia families. Her particular expertise is in helping multi-generational families apply wellness approaches to managing chronic illness. She holds a doctorate in therapeutic counseling, and is a widely published writer and speaker specializing in health and healing.


Emerson Hospital (Concord MA) Fall Prevention Workshop Mon Apr 8 9:30AM

Written by James Reynolds

Probably the single greatest reason we are called to serve families is to provide care following a fall by an elder. Particularly when people have lived in a home for decades, we see that homes and people have not adapted to the extra care needed to prevent falls. These are preventable events, and families with elders will be well-advised to attend Emerson Hospital's free workshop.

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Falling - Don't let it happen to you or someone you love

Emerson Hospital Falls Prevention Conference
Monday April 8, 2013
9:30AM - 1:30PM

Holiday Inn Boxborough
242 Adams Place
Boxborough, MA

Learn to prevent dangerous slips, trips, and falls

Falls are the leading cause of serious injury for people over 65. Falls are NOT a normal part of aging; simple steps and information can hep prevent these dangerous accidents.

Emerson Hospital will provide a complimentary lunch, health screenings, and workshops designed to help seniors and their family lead safer, healthier lives.

Screenings and workshops include:

  • Balance assessments
  • Vision screenings
  • Foot screenings
  • Tips to stay safe at home
  • Exercises for better balance
  • Eating for better balance
  • Blood pressure
  • Minding your medications
  • Diabetes screening
  • Neurological changes

Seating is limited and registration is required. Call 1-877-9Emerson (877-936-3776).


NPR: Alzheimer's Deaths Increased 68% in Last Decade

Written by James Reynolds

NPR-logo

People familiar with Alzheimer's Disease and related dementias listened with interest last month as NPR reported recently (Alzheimer's 'Epidemic' Now A Deadlier Threat To Elderly) on the Alzheimer's Association release of statisitcs showing that Alzheimer's death rates are soaring, even as death rates from other diseases decline. The 68% increase in Alzheimer's deaths between 2000-2010 does mask some good news: other health factors like heart diseaes, which typically kill at earlier ages, are declining - leaving longer-living patients vulnerable to Alzheimer's as they age. Paradoxically, however, the only disease with a rising death rate and with no effective treatment and no cure or vaccine receives scant funding for research into solutions.

Because Alzheimer's rarely strikes until old age, many people mistakenly assume that it is simply an inevitable part of the aging process. Additionally, since its victims are almost always old while those of other diseases tend to be younger, there is a natural tendency to focus attention where it can add more years of life to the patient.

But using that "every dies of something" as a reason not to fund Alzheimer's research reflects ignorance of the problem. Healthy aging, and certainly a healthy brain, is possible until the end of life. Alzheimer's and dementia are slow and cause great burdens to sufferers and to their families.  A decade or more of quality life experience is often lost by people ortherwise fairly healthy. Given the demographic trends and the number of people now at risk of developing dementia, the time has come for a dramatic increase in medical research for a cure or vaccine.


Expert Tips: How Professional Caregivers Motivate Seniors to Get Active

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“You’re never too old to improve strength and stamina,” I find myself saying to yet another new home care client at our first meeting. This time, it’s a delightful woman who is no longer able to care for herself. It’s not due to a specific disease or injury. It’s a generalized weakness and a loss of mobility developed over time that keeps her now from doing her own personal care, housework, and errands.

She’s lost her independence to a large degree because of too little walking, stretching, lifting, and reaching. As it common, she’s also developed a terror of falling, which keeps her even frozen to the couch – a fear that becomes a self-fulfilling prophesy, as more muscle loss causes greater unsteadiness on her feet. Surely this is the harbinger of some future fall if it’s allowed to continue in this direction.

“Mom, I toooooold you to join the gym and work out! I do the elliptical a half hour each session, and it would do you a world of good, too,” enthusiastically inserts the adult daughter. “Work up a sweat every day! Take an aerobics class! You’ll love it!”

Mom looks at daughter with a jaded eye, no doubt recalling that recently she was too weak to rise from the toilet herself and was stuck there until a visitor arrived It’s clear that the two women’s realities are light years away each other in what becoming stronger means. As a result, the elder bristles and erects a stone wall of refusal. The daughter feels at her wit’s end. This, too, is all too common.

“I find that an aggressive family member can turn off an elder to more activity because they each have such different ideas of what that involves,” says Concord’s Diantha Millott, a certified personal trainer whose specialty is working with chronic disease, disabilities and geriatrics. “The message ‘you have to work long and hard or you won’t improve’ is just not true. Five minutes of walking inside the house at their own speed can be very effective. Gentle prodding and support are key.”

Families would do best to make that prodding coincide with something the elder feels is important. Our caregiver, Nick, who holds a degree in applied fitness, believes it’s at the very least a matter of respect to let people choose their own goals. “If their goal is ‘I want to be able to walk to the mailbox and back,’ then that’s where we focus. Often the children have ideas that are more about what they wish for their parents. I’ve never seen it be productive to tell an elder what to do.” He offers our clients concrete information about how more activity will benefit them, which helps motivate them to meet their own goals – but on their own terms.

A challenge to helping an elder gain strength is the myth that they’ll “bulk up and look like Arnold Schwarzenegger,” says Millott. “Women are particularly worried about this, but I assure them we are working to improve their balance and stamina, support their joints, reduce swelling in their legs and feet, and increase their blood circulation. This isn’t about trying to look like Arnold!”

A successful practice for increasing activity is to fit it into what gives them pleasure, points out Mary Ann, another of our caregivers. “Bring them to look at the birds at the window, go outside to see the plants growing. Acknowledge that for them activity may be difficult or tiring to do, but that it’s worth trying even for a short distance. And I make sure I don’t do things for them that they could do for themselves, to keep them active.”

Because we regularly find ways to encourage and support more activity with our homecare clients, including but not limited to formal “exercises”, many of us notice improved mental functioning linked to increased physical activity. This is for a variety of reasons, likely increased blood circulation being a primary cause. Also, activity stimulates the body to create “feel good” chemicals, helping to improve mood and reduce perceptions of pain, which further increases motivation and acceptance of activity.

Millott adds a few additional, concrete tips to help your loved one get and stay moving:

  • Make sure they stay well hydrated through the day, especially before, during and after exercise
  • Create a safe environment to practice balance building. Stand with the elder’s back in a corner, but not touching the wall. Have a second person stand in front of the elder, with both pairs of hands lightly touching, ready to engage if help is needed.
  • Always be aware of and respect any restrictions on activity placed by a physician.
  • Look for social opportunities such as joining a walking group or water aerobics class to help provide motivation and accountability.

Focusing on the elder’s own goals, celebrating achievements, and enjoying camaraderie with regular practice, aging people can maintain or improve their independence and enjoyment of life, regardless of age.

Editor's Note: This post originally appeared as Steps for getting more independent now in our column Living and Loving: Elder Care in the 21st Century in the Concord Journal.


Healthy Concord Community Forum, Sat 3/30 9:30AM

Written by James Reynolds

concord-thrivePeople concerned about elder care and resources for senior citizens living in Concord should attend Saturday's Healthy Concord Community Forum at the Harvey Wheeler Center, 9:30am - 12:30pm. This is a chance to alter the resources and emphasis the Town places on issues of elders and elder care.

Back in the fall, the Town of Concord embarked on a healthy community planning project to assess the physical, mental, emotional, and spiritual health and overall well-being of the community. The project has worked to identify Concord’s existing assets and resources, define residents’ needs, and determine opportunities for improvement. The focus of the Healthy Communities effort has been on local issues that affect health and quality of life, such as:

  • Public health concerns such as heart disease, substance abuse & air quality
  • Housing and education
  • Youth development
  • Access to health/medical care
  • Child care and elder care
  • Recreation
  • A clean and healthy environment
  • A safe environment
  • Arts and cultural pursuits
  • Transportation

For more information contact Jill Block, Healthy Concord Coordinator at This email address is being protected from spambots. You need JavaScript enabled to view it. or Susan Rask, Public Health Director at This email address is being protected from spambots. You need JavaScript enabled to view it.. Register by e-mail to This email address is being protected from spambots. You need JavaScript enabled to view it.. Please specify if childcare is needed.


Support Meals On Wheels in Concord and Nearby Massachusetts Towns!

Written by James Reynolds

march_for_meals_logo2Last chance is TODAY! Local residents can support Meals on Wheels by bidding on some terrific restaurants and other contributions available until 10PM EST tonight. March for Meals is a national campaign sponsored by the Meals on Wheels Association of America to raise awareness about senior hunger, recruit volunteer Meals on Wheels drivers and raise needed funds. This month the March for Meals online auction, with gift cards to restaurants, grocery stores, coffee shops and other food-related businesses as well as Red Sox tickets. Place your bids here.

Minuteman Senior Services is a non-profit organization that has been helping elders and their family caregivers in Massachusetts locate appropriate eldercare assistance since 1975. Their mission is to help seniors and people with disabilities live in the setting of their choice by engaging community resources and supporting caregivers. Over 22,000 people each year turn to them for help. Caring Companion Home Care has worked with Minuteman in a variety of capacities for years, including as an approved home care agency in their publicly-funded program for low-income seniors. Through the Executive Office of Elder Affairs, Caring Companion Director of Care Dr Deborah Bier was trained in pilot program with the Massachusetts Alzheimers Association for Rehabilitation Therapy, and we now use this as the basis for all our Alzheimer's training for our caregivers and client families.


Emerson Hospital Reduces Infections by Managing Catheter Care, Convenience, and Risks

Written by James Reynolds

dr-gregory-martin-emerson-hospitail-concord-maYesterday I attended a presentation by Dr Gregory Martin, Chief Medical Officer of Emerson Hospital in Concord MA.  Dr Martin highlighted, with justifiable pride, a recent program by Emerson to reduce their already-low rate of hospital infection. Anyone familiar with current elder care issues at hospitals knows the concern that the facilities can be a petri dish of infection, and with frail elders and compromised immune systems, the risk of becoming sicker in a place designed for healing is one of the frustrating ironies in today's health care world.

As a home care agency owner, I was particularly interested in his remarks about reducing infection for clients with catheters, since so many of our clients have them. 

The primary method for their dramatic reduction was simple: avoid as many catheter days as possible. Catheters are sometimes medically necessary but can remain inserted longer than necessary because of the convenience they offer nurses, patients, and caregivers.  But that convenience comes with a risk: the catheter offers a pathway into the body and the bloodstream, and every day it is in use increases the opportunity for infectious bacteria.

I had hoped that Dr Martin would identify procedural steps which, combined with standard precautions around infection control, home care workers could follow to support the reduction in infection rates. But as it turns out, the largest role our staff will play is helping with care for clients who cannot manage toileting tasks independently and who, because of the reduction in catheter days, have more days when they will need help.

Families with elders who use catheters, especially following a hospitalization, might do well to check with the physician to determine the earliest point when the catheter can be safely removed.  It does increase the care burden for families or professional caregivers, but if the trade-off is reduced chance of a hospital readmission, the additional work is more than worth it from every viewpoint: financial, patient health, quality of life, and simple disruptions in the lives of all who family who care for a hospitalized elder.


Avoiding Unnecessary Hospital Readmissions via Mobile Home Care Technology

Written by James Reynolds



NEHIMSSlogo

Earlier this week I attended a meeting of the New England Health Information Management Systems Socitey (NEHIMSS) about use of mobile technology in health care, including home care. The session, delivered by Dr Fernando Martinez, focused on hospital systems and issues of security and cost as well as quality of care. But I was again struck by the importance of the data collected by home care workers and the potential to improve health outcomes, reduce cost, raise patient quality of life, and lower the stress of family caregivers if the data is documented and followed by either an educated lay person (family member or non-medical case worker), so that earlier intervention can eliminate hospital stays.

Hospitals are heavily focused today their 30-day readmission rates. If patients have to return to the hospital within 30 days of discharge, hospitals lose a lot of money, due to regulations that have recently gone into effect via the Afforable Care Act (ACA, or Obamacare). But sending nurses to patients for follow up is expensive, and often the relevant data can be collected (not diagnosed, but collected and reported) by family members or home care workers, especially CNAs.  This doesn't even need to be biometric data (blood pressure, insulin levels, etc.).

Readers of this blog know that we have for years been using the Connected Home Care family web portal, which we developed precisely so that we can improve care by getting more data to family and agency decision-makers faster. Caregivers post reports after every visit, and can easily document many factors that indicate a need for early intervention that can avoid a hospitalization. Here is a list of factors we watch so that we can escalate quickly rather than allow health to deteriorate:

  • Lack of compliance physician’s with Plan of Care
  • Failure to follow prescribed med regimen
  • Increased difficulty with mobility
  • Changes in appetite or energy
  • Unresolved skin conditions or respiratory ailments
  • Confusion, sleeplessness, or mood changes
  • Increased rising from bed at nighttime for bathroom trips
  • Reduced capability with Activities of Daily Living (ADLs)

Without remote, mobile access, these conditions typically go unreported to a decision-maker for a week or more.  But posting this in a secure report allows family and case managers to monitor conditions far more closely.  Accountable Care Organizations (ACOs) and hospitals should press their software system suppliers to include features like this that allow the patient, family, and other authorized users to post data on patient status for review and, when indicated, action by the health care provider. The benefits are clear, the cost is low, and the technology is available -- indeed, we have been using it in the field since 2009.


Navigating Difficult Times with Patience and Love

Written by James Reynolds



The following article first appeared as Navigating Difficult Times with Patience and Love in our column Living and Loving: Elder Care in the 21st Century, in the Concord Journal.

Karen Tannenholz works in our office, and last summer she faced the kind of sudden medical emergency we help many people through. Stressed families often imagine their circumstances are unique, but Karen’s story reveals threads common among many: feelings of growing confusion, helplessness, stress, anger, and even humor are all normal. Ultimately, deeper appreciation of each other can emerge as we navigate together through some of life’s most difficult passages. To hear Karen’s story, click 'Read More' below:

My mother is 79 and my stepfather, 87. They have battled Dad’s Parkinson’s for 11 years, but it was only after my parents moved to Connecticut in 2004 that we learned that Mom had been calling paramedics each time my stepfather fell. She had been getting up six times each night for months to help him to the bathroom. They needed help, but my brother, sister, and I didn’t know how to give it.

We watched as medical conditions worsened for both of them. Money management became difficult. But at that time we didn’t know how to get information from doctors, talk to visiting nurses, decipher Medicare, and handle legal issues. We finally put aside feelings of guilt and stepped in – not only to maintain life quality for our parents, but also to preserve our own emotional and physical health.

After my stepfather broke his hip in 2010, my parents hired daytime caregivers. But my mother still became house-bound, feeling that she had to be with her husband. I helped around the house and tried to tactfully suggest practical solutions. She wouldn’t accept them. As our concerns mounted, my brother, sister and I began to talk daily. While my brother handled legal and financial issues, my sister visited and took her out for lunch. I joked with Mom that putting the three of us together would create the perfect child. But I didn’t feel like a child anymore.

Then as I visited last summer, Mom frantically called my name one night. Dad was delusional. Still in bed, he had a tight grip on her wrist and was yelling that we were trying to kill him. Mom told him that he was having a bad dream, but he slapped her in the face. He had always been gentle, and I realized that he was not only delusional, but terrified. I wanted to call 911, but she told me they had an emergency plan in place and I should call hospice and get the medicine they had left her. As Dad continued yelling, I dashed down the hall, angry that I had known nothing about her plan before this happened.

We gave him a tranquilizer, and I spoke to him calmly, saying he was safe. As I searched for soothing music on his TV, he began calling out random channels,”66, 24…53!” Overwrought and exhausted as I was, the absurdity of those numbers nearly caused me to burst into hilarious laughter. Finally, as the tranquilizer took effect, Mom and I turned out his light and sat listening in the next room, hugging each other. The incident had lasted two hours. We decided not to remind Dad of what had happened.

The next morning, we met with their hospice nurse and social worker. When asked if we needed 24 hour care, my mother and I answered, “No” and “Yes”, at the same time. I looked at her and explained, “Mom, he wasn’t hurting YOUR mother.”

The next two days were a blur. Despite my mother’s objections, and telling her I was going out for medicine, I stopped to meet their lawyer, see a nursing home and get medical consent forms for my sister and me. I got advice from my coworkers and typed out a contact information sheet for caregivers and family. I fired one caregiver who had not cleaned Dad nor transferred him properly, and found a local family-run care agency to provide 24 hour care. I couldn’t think clearly for the next few days.

My parents slept soundly through the first night of live-in care. They, and we, are happier and calmer. Their caregiver is now part of our family and Dad no longer needs hospice care.

Last month, I teased him, saying that his heart-shaped pillow was very romantic. He leaned over, asking Mom, “Is Karen leaving now?” Mom answered, “No, of course not.” He stage whispered, “I mean is she mentally leaving us?” He still shares his dry sense of humor, only he speaks more slowly. I kiss him and say “I love you” often and now have a deeper relationship with my parents. We have shared this struggle and found answers, together.

And so it is with many families. A difficult passage, to be sure, but with patience and love it can be a blessing nonetheless.


Blizzard Watch -- Keeping Elders Safe Through Homecare

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I took a short break this afternoon, and when I tuned back into the world of news, I found that the expected winter storm Friday into Saturday was now being called a BLIZZARD WATCH!  Eighteen to twenty-four inches are being forecast with high winds. My goodness... 

We rolled into action to consider the safety of every shift change Friday and Saturday... will the roads the safe? Will it be snowing too heavily? How can we serve clients Saturday night and Sunday morning safely? We will work with families and caregivers to create a plan for any shift changes that may be made unsafe or impossible by this storm. We will be in touch wiht impacted families and caregivers.

In the meantime, this is the right moment to share two blog posts I wrote from a past winter storm/blizzard. They contain info about prepping clients' and the caregivers' homes, and other important information. Please review this and then get into action to get ready.

Who Will Shelter Your Elder Loved One in an Emergency?
http://www.caringcompanion.net/blog/view/1873-who-will-shelter-your-elder-loved-one-in-an-emergency


First Possible Winter Storm Coming, Eastern Massachusetts 
http://www.caringcompanion.net/blog/view/1163-first-possible-winter-storm-coming-eastern-massachusetts


Easten Massachusetts Winter Storm Forecast Upgraded To a Blizzard
http://www.caringcompanion.net/blog/view/1177-eastern-massachusetts-winter-storm-forecast-upgraded-to-a-blizzard



Concord Park Photovoice Project Shows Deep Emotional Experience of Dementia Residents

Written by James Reynolds

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Hats off to Mary Baum, Nancy Crowley, and the team at Concord Park for their terrific PhotoVoice project! I attended the open on Thursday November 29, and it was very impressive. We had previously blogged about this project (see our post from October 31). The emotional power of the images and the descriptions reveal a lesson we always emphasize to the families of our clients and to our caregivers when we conduct training: although reasoning and language ability may decline, the emotional experience of people with dementia remains vivid. This is why it is so important to “meet them where they are.” Absent safety concerns, the immediate facts are irrelevant, but the emotional life of the person are real.

"It looks like a trough, so they won't escape. We used to have rubber ducks in the tub. The colors make it, and you can see one has a patch over his eye. The image makes me think of my childhood. I spent a lot of time with my grandmother and she liked things just so. I have fond memories of her and she lived to a good age. My aunt lived with her and she liked to cook and take care of people.

I came across a picture of my mother today. I don't have many memories of her. She died when I was six. That's why I spent so much time with my grandmother - my father had his hands full.".
-- Mary, Concord Park resident

I was especially struck by the photo and caption I have included in this post. The decline in language is evident. But look at the memories and emotions revealed in the caption that this woman dictated as she gazed at the photo! Most often, people surrounding her are probably unaware of the deep associations that everyday objects may bring to her mind. Those memories and emotions not doubt remain unarticulated unless she is lucky enough to have people like the staff at Concord Park and the PhotoVoice project, but they are nonetheless meaningful and deeply-rooted. This project is a reminder that with conscious effort, we can share memories and experiences with our clients and families that are rewarding on their own terms, just as they are today. Thank you, Mary and Nancy, for opening this window into the lives of these residents, and for the obvious contribution this program is making in their lives.

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Holiday Tips: Take the Time for Care Planning

Written by James Reynolds

Editor's Note: The post below recently ran in our column Living and Loving: Elder Care in the 21st Century, in the Concord Journal.

iStock 000005242444XSmallReaders and others often ask us how to start conversations with parents about planning for the parents’ potential care needs and other aspects related to their declining capabilities. As we approach the holiday season, this is an especially good time to have these conversations – key family members who may be available only during holidays are often present, and it may be easier, even given holiday activity, to find some time for a quiet conversation. In hopes of facilitating a successful discussion this holiday season, we offer a few thoughts about what needs to be discussed, and how to conduct a conversation with an elder family member to plan for a time when he or she may not be able to manage independently.

First, as you approach the conversation, you will typically find best success if you think of it as

a normal planning conversation. At all costs, avoid connotations that suggest this is a “now that the end is near” discussion. Not many people, especially those for whom the end may be approaching more quickly than they wish, want to reflect on their demise. Rather than present it in a way that makes Mom think that you are measuring her for the coffin, make it a normal planning activity that all responsible adults should conduct.

All of us should a medical proxy designated and power of attorney named to handle matters if we become incapacitated; everyone should have a current will and a record of where all the bank accounts are and the account numbers and relevant data. You might even mention that you recently reviewed your documents with your attorney to be sure they were up to date (if it’s a white lie but it makes the conversation easier, my advice is lower your standards and say it). Make up a “life event” excuse – we did it because the kids are older, someone left for college or graduated, you changed jobs, got divorced or remarried, moved to a new town, whatever. And having recently reviewed it yourself, it prompted you to ask about your elder – what would he or she want if there were a car accident or a sudden surgery and they needed help? Who should handle the money and who should make care decisions? What kind of care would they want?

Depending upon the personality of the elder, you may still get resistance. This is especially true if the person tends to use denial as a coping mechanism. But if you approach it as a hypothetical exercise (what if there were a car accident or a sudden surgery?), you may find more success. If the person is concerned that you are really maneuvering to take away the car keys, you will be met with suspicion and mistrust.

The trickiest part is often not the actual end of life – most people will concede it will come eventually, just not now – but the period prior to that, when they are healthy enough to live at home but not quite able to manage alone. In these cases, the elder typically is concerned, legitimately, about a loss of privacy, but also often needlessly concerned about a loss of autonomy. They may well fear that you want (or hope to) send someone who will tell them what they can and can’t do, and who will report on – “tattle” is how they are likely to see it – their activities.

The best way to avoid that kind of resistance is to present the care you think is needed, or may soon be needed, as an assistant. No one wants a baby-sitter, but most folks would like to have someone to handle daily tasks we don’t want to do ourselves. If it is clear to the elder that he or she remains in charge, and is giving the orders rather than being ordered around, resistance often declines. Let the assistant take care of the grocery shopping or the laundry, and Mom can relax. That has much more appeal than someone who is going to tell you that you are too old to drive any more.

As always, we strongly recommend that these conversations be started before they are needed. Once the person begins to decline, his or her resistance is likely to grow and any cognitive impairment can make the conversation difficult, or even or impossible. It may take several attempts so start early. And do not be afraid to ask for help from a counselor, clergy member, family friend, or a professional. These efforts will always pay dividends if the time comes that care is needed.

 


Photo Exhibit by People with Memory Loss in West Concord, MA

Written by James Reynolds

Concord Park in West Concord, MA announced the opening of The PhotoVoice Project, a distinctive exhibit featuring the photographs and writing of older adults living with memory loss (see video below for a view of last year's exhibit in a sister community in Hopkinton, MA).

The Opening Reception for the exhibit is Thursday, November 29, 2012 from 4:00-7:00pm at Concord Park located at 68 Commonwealth Avenue, Concord. The public is invited to attend to view the works and will have an opportunity to meet the artists.

The PhotoVoice Project was developed by several researchers at the University of Michigan to enable individuals with disabilities to identify, represent and articulate aspects of their lives by working with cameras to capture images of interest and then giving meaning to those images through words.

Senior Living Residences, the Boston-based company which manages the daily operations of Concord Park and created Compass Memory Support, is the first assisted living company in the United States to adapt this program for individuals living with different types of dementia. Exhibiting the work at the end of the six-week project in a public space creates a forum for dialogue, awareness and solidarity with individuals living with memory loss who are often isolated and misunderstood by society.

According to Mary Baum, Compass Program Director at Concord Park, “We are excited about the ways in which the PhotoVoice Project is positively affecting individuals living with memory loss. This unique project increases engagement, improves mood, and offers our residents a pathway to tap into emotional memory and the rich history and identity of their lives. Exhibiting their work allows the general public to move beyond the stigma of Alzheimer’s disease to see the person who is still there, who still has so much to offer.”

She added, “The enormous positive impact of this program on the lives of individuals living in Senior Living Residences’ communities is reflected in the words of a woman at one of our sister communities who said, ‘Thank you for bringing the world back to me.’”

Compass Memory Support programming treats the symptoms of memory loss. Through an affiliation with Boston University School of Medicine’s Alzheimer’s Disease Center, Compass puts research into action through social engagement, lifelong learning, physical fitness, the arts, and an award-winning Brain Healthy Cooking Program. Ms. Baum said, “We believe individuals with memory loss should have the fullest possible sense of control over their daily lives, continue to learn, enjoy personal relationships, play a role in their own care, and live meaningful lives. The PhotoVoice Project is one way we achieve these goals.”

Concord Park is located at 68 Commonwealth Avenue in Concord. For more information, visitwww.concordpark.net or call 978.369.4728.


Alzheimers & Dementia Class, Adult Ed, Concord, MA

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Intro to Habilitation Therapy for Alzheimerʼs Disease &
Related Dementias

Oct 18, 2012 & October 25, 2012
7:30-9:00 PM
CCHS
2 Sessions, $29

Habilitation Therapy (HT) is considered by the Massachusetts Alzheimer’s Association to be the best caregiving practice that exists today. Learn about this comprehensive behavioral approach that will help both dementia patient and caregivers alike, which can help improve their quality of lives dramatically. HT helps difficult symptoms be reduced or eliminated, regardless of what stage of the illness the patient is current experiencing, by skillfully adapting to the capacities of the patient and communicating accordingly. Habilitation Therapy helps caregivers have positive and successful interactions with dementia patients, reducing stress, allowing greater enjoyment of each day.

There are still some seats available in this class. The 2-session training is structured to allow for learning of concepts, then practicing them, and then coming back to learn more concepts and trouble shoot difficulties encountered -- and to celebrate successes! Contact Concord Carlisle Adult & Community Ed to register. 978 318-1432.

FACULTY Deborah Bier, PhD, is certified by the Mass. Alzheimer’s Association and the Executive Office of Elder Affairs to train dementia caregivers and coach dementia families. She is the director of care for the metrowest Boston office of Caring Companion Home Care in Concord. She has trained professional and family caregivers across the US in these methods. Deborah holds a doctorate degree in therapeutic counseling.


Alzheimer's and Dementia Series: Part 5

Written by

Editor's Note: This is the last of a multi-part series on Habilitation Therpay for Alzheimer's and Dementia, all by our Director of Care, Deborah Bier, PhD.  These articles first appeared on www.PsychCentral.com, where Dr. Bier is their Alzhiemers & Dementia columnist. Psych Central is the Internet’s largest and oldest independent mental health social network.

Truths & Lies I Told My Father

A person with dementia can be said to be inhabiting a different world with a different reality than the rest of us. Habilitation Therapy (HT) tells us that they cannot leave there to be with us, no matter how much we may want them to. (Alzheimer’s Association, 2011) It is the job of care partners to be with that person by traveling to their world. This is done by understanding what they are experiencing, and respecting — never negating — their experience.

If, in the world of a person with Alzheimer’s Disease or a related dementia (ADRD), she is 8 years old (not 80), and waiting for Mother to pick her up after school to go home and milk the cows, then that is the world to which care partners must travel. It doesn’t matter a bit that Mother died 50 years ago because that is not true in the reality where the person with dementia is living... (see the rest of this article here)


Alzheimer's & Dementia Series: Part 4

Written by

Editor's Note: This is the next in a multi-part series on Habilitation Therpay for Alzheimer's and Dementia, all by our Director of Care, Deborah Bier, PhD.  These articles first appeared on www.PsychCentral.com, where Dr. Bier is their Alzhiemers & Dementia columnist. Psych Central is the Internet’s largest and oldest independent mental health social network.

Alzheimer’s & Dementia: Environmental Impact

While vigilance must be maintained and approaches honed as the disease progresses, simple but vital changes to the dementia patient’s environment can make a real difference in quality of life, safety and ability to function more independently. Applying our understanding of what isn’t working right in the visual cortex of the ADRD brain is central to creating the right interventions.

Here follow some concrete examples.... (see here for the rest of this article)


Alzheimer's & Dementia Series: Part 3

Written by

Editor's Note: This is the next in a multi-part series on Habilitation Therapay for Alzheimer's and Dementia, all by our Director of Care, Deborah Bier, PhD.  These articles first appeared on www.PsychCentral.com, where Dr. Bier is their Alzhiemers & Dementia columnist. Psych Central is the Internet’s largest and oldest independent mental health social network.

Alzheimer’s & Dementia: Emotions Rule

Habilitation Therapy (HT), a comprehensive behavioral approach to caring for people with Alzheimer’s Disease and related dementias (ADRD), is considered to be a best practice by the Alzheimer’s Association (Alzheimer’s Association, 2012). HT is best used for every interaction a person with ADRD has with their care partners, from the moment they rise until they fall asleep at night. One of Habilitation Therapy’s primary goals is to create day-long positive emotional states for dementia patients (Alzheimer’s Association). His or her capabilities, independence and morale are thoughtfully and continuously engaged to produce a state of psychological well-being.

Why such an enormous focus on emotions?.... (see the rest of this article here)


Alzhiemer's & Dementia Series: Part 2

Written by

Editor's Note: This is the next in a multi-part series on Habilitation Therpay for Alzheimer's and Dementia, all by our Director of Care, Deborah Bier, PhD.  These articles first appeared on www.PsychCentral.com, where Dr. Bier is their Alzhiemers & Dementia columnist. Psych Central is the Internet’s largest and oldest independent mental health social network.

Alzheimer’s & Dementia: The Eyes Have it

Seeing is believing, yes? In our day-to-day world, we believe that what we see around us is pretty much what others with healthy eyes can see. We see a clear glass filled with milk sitting on a white table, and we assume that others can see a clear glass filled with milk sitting on a white table, too.

But that’s not necessarily true if someone has Alzheimer’s Disease — they may only see the white table. Though it is not widely recognized, it is a fact that people with several types of dementia (but especially Alzheimer’s Disease) experience significant changes in the way their brains take in and interpret visual information, generally unconnected to eye health and function. These changes follow several predictable patterns that powerfully influence the behavior of people with dementia... (see the rest of this article here)